If you're living with a chronic illness, you're in the right place.

Thursday, December 13, 2012

Moving in the Wrong Direction

2:14 PM Posted by Tiffany Taft , , ,
It's been in the news recently, the upcoming 5 version to the Diagnostic and Statistical Manual for Mental Disorders - or DSM 5.  The DSM, published by the American Psychiatric Association, is the guidebook that every mental health professional is supposed to use to make a mental health diagnosis.  It contains the symptoms, timeframes, and exclusions for every condition from acute stress disorder to voyeurism.

Where the magic happens.
Version 5 has been worked on for years and is due out in 2013.  Much of the news reports about this version have to do with the elimination of Asperger's in lieu of creating an Autism spectrum on which people with Asperger's will now fall on the mild end.  Other concerns are that normal bereavement will now be considered major depression due to loosening of the depression diagnostic criteria.  But my concern lies with the changes to an existing diagnostic category - Somatoform Disorders.

Rather than repeating what's in store in DSM 5, this article provides an excellent summary of the proposed changes.  It's really worth taking the time to read, whether you have diabetes, irritable bowel syndrome, lupus, or fibromyalgia.  The bottom line is, regardless of the etiology of your chronic illness you are a candidate for the Somatic Symptom Disorder (SDD) diagnosis.  If you're a parent caregiver, your reactions to your child's illness may be deemed pathological as well.

So what does this mean?

Like most things in the DSM, there's ambiguity and room for interpretation from the mental health provider about if a symptom or behavior meets the diagnosis criteria.  Terms like "excessive," "disproportionate," and "exceedingly high" are used to describe worry or time/attention dedicated to one's health.  My opinion on what's excessive health-related worry may differ from the next therapist and from the next.  What happens when people living with chronic illness are experiencing relatively normal reactions to a flare up or new diagnosis and are labeled with SDD?  So now they not only have Rheumatoid Arthritis but have RA and SDD.

Will their symptoms be taken as seriously or will they be seen as people who blow things out of proportion and be blown off?

Actual someecard.
Will a diagnosis of SDD be given in haste to a person with as-yet medically unexplained symptoms, who will then be denied testing to ensure there really isn't something wrong?

Will the SDD diagnosis become the diagnosis du jour for women experiencing physical complaints?  Notice the task force for SDD is a bunch of men.  The only woman on the panel "was withdrawn" in 2011.

You demand answers?  You must be excessively anxious.
Are there people who have "excessive" or "disproportionate" concerns about their health or medical diagnosis?  Yes.  I think of people who cut themselves off from their friends and family, who can't go to work for fear of having symptoms in public, or who cannot think of much else other than their illness.  In my experience, this is not the norm but a relatively small percentage of the hundreds of people I've seen living with a chronic medical condition.  And I'm not sure what giving them an SDD diagnosis will do for them, even if they met the "official criteria."

The most concerning thing is there is no published research to back up any of this.

Yeah!
As someone who has spent the last 9 years trying to advance the understanding and integration of physical and mental health, and de-stigmatize normal human reactions to illness, especially for those with "functional" conditions like Irritable Bowel Syndrome, I see this reclassification as an enormous step in the wrong direction.  Rather than acknowledging that with a chronic illness comes normal feelings of worry, sadness, frustration, curiosity, anger, or *gasp* anxiety or depression, the DSM 5 is pathologizing them.  And only one of these "excessive" feelings need be present, only for 6 months.

Are the members of the committee responsible for this change really trying to say that someone who was diagnosed with stage 3 breast cancer a month ago best get their emotions under control because the statute of limitations on worry is 182 days?

Clock's tickin' people.
Or the person living with severe Irritable Bowel Syndrome, a still relatively poorly-understood condition with few medical treatment options, shouldn't spend more than an hour or 2 on the internet looking for remedies or connecting with others via online support communities?  People living with IBS already face considerable stigma and implication that their symptoms are "all in their head."  Consider what an additional diagnosis of SDD would do to their status in both the medical and lay community.

Or the mother of a child with multiple, severe food allergies who is worried about contamination and its subsequent anaphylaxis?  Is her vigilance in keeping her child safe from a potentially lethal event "excessive" or the normal reaction to something that could prematurely end her child's life?  Is it something I should recommend some Valium for or validate as normal and help her cope with?

What are your thoughts on these changes?  Will SDD be a help or hindrance to those living with a chronic medical condition?